Why I Don't Support Autism Speaks

Autism Speaks is one of the largest and most well known, ASD non-profit organizations in North America. Every April they urge us to ‘light it up blue’, and to donate to help fund services for autism families. They continuously harp on their mission to promote acceptance and awareness of autism. Autism Speaks uses their large platform to help the autism community on a legislative level. They’ve recently introduced a bill to Congress that if passed, would improve and increase state funding and services for those with autism. Another way they contribute to the autism community is by funding autism related research. I recognize that Autism Speaks has contributed a lot to the autism community, and I am no way trying to demonize the organization or the people who support it. However, I think it’s important that people know the controversy surrounding Autism Speaks.

In the beginning I was very interested in what had looked to be, a trust worthy source of helpful information. At first glance, I noticed an overwhelmingly large number of autism parents in support of Autism Speaks. During Autism Awareness Month, places like grocery stores and coffee shops help collect donations in support of Autism Speaks. I initially didn’t hear much negative backlash about the organization. It wasn’t until a year or so that I had begun to look into other non-profit organizations, and began reaching out and connecting with people with autism. That’s when I noticed that something really stuck out to me. With all the great people I’ve met, and have come know on this journey, I hadn’t come across any people with autism who supported Autism Speaks. In fact many of them spoke of them in anger and disgust. I began to realize this wasn’t some sort of conspiracy theory, or some kind of misinterpreted information. The truth is Autism Speaks is doing more harm, than good.

  1. Only a Small Percent of Donated Money Goes to Family and Services

Autism Speaks raises around 50 million dollars a year in fundraising and donations. A majority of people who donate to Autism Speaks assume a good portion would go towards helping autism families and supporting people with autism. Unfortunately, that’s not the case. Last year less than 2% of funding had gone towards ensuring ASD families and people are receiving the help and services they need. Prior to that, it was only 4%. A majority of the budget is spent on research and fundraising. While research is important for us to better understand autism, their focus is on curing and eliminating autism. Majority of their research is geared towards the future of autism, instead of focusing on bettering the lives of those affected now. On top of the small percentage that actually goes towards providing services and support for those who need it, at least 13 individuals receive a salary between 200k-450k. Numbers like this are leaving people wondering how genuine their motives are.

Autism Speak’s Return of Organization Exempt From Income Tax (2016).
Autism Speak’s Return of Organization Exempt From Income Tax (2017).

2. Their Choice of Advertisment Hurts The Autism Community

Autism Speaks receives a lot of back lash on their choice of advertisement. In 2009 they produced and released a PSA video called ‘I Am Autism’. What made the video so controversial is what is being said. The video claims that, “Autism works faster than pediatric AIDs and cancer combined.” and states, it’ll “ruin your marriage and bankrupt you.” The video portrays people on the spectrum as a burden and fosters fear instead of acceptance. The video continues on to makes comments about how autism will “embarrass” you and make family outings impossible. I couldn’t believe what I was hearing. Here’s a transcript.

I am autism.
I’m visible in your children, but if I can help it, I am invisible to you until it’s too late.
I know where you live.
And guess what? I live there too.
I hover around all of you.
I know no color barrier, no religion, no morality, no currency.
I speak your language fluently.
And with every voice I take away, I acquire yet another language.
I work very quickly.
I work faster than pediatric aids, cancer, and diabetes combined
And if you’re happily married, I will make sure that your marriage fails.
Your money will fall into my hands, and I will bankrupt you for my own self-gain.
I don’t sleep, so I make sure you don’t either.
I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain.
You have no cure for me.
Your scientists don’t have the resources, and I relish their desperation. Your neighbors are happier to pretend that I don’t exist—of course, until it’s their child.
I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness.
I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up you will cry, wondering who will take care of my child after I die?
And the truth is, I am still winning, and you are scared. And you should be.
I am autism. You ignored me. That was a mistake.
And to autism I say:
I am a father, a mother, a grandparent, a brother, a sister.
We will spend every waking hour trying to weaken you.
We don’t need sleep because we will not rest until you do.
Family can be much stronger than autism ever anticipated, and we will not be intimidated by you, nor will the love and strength of my community.
I am a parent riding toward you, and you can push me off this horse time and time again, but I will get up, climb back on, and ride on with the message.
Autism, you forget who we are. You forget who you are dealing with. You forget the spirit of mothers, and daughters, and fathers and sons.
We are Qatar. We are the United Kingdom. We are the United States. We are China. We are Argentina. We are Russia. We are the Eurpoean Union. We are the United Nations.
We are coming together in all climates. We call on all faiths. We search with technology and voodoo and prayer and herbs and genetic studies and a growing awareness you never anticipated.
We have had challenges, but we are the best when overcoming them. We speak the only language that matters: love for our children.
Our capacity to love is greater than your capacity to overwhelm.
Autism is naïve. You are alone. We are a community of warriors. We have a voice.
You think because some of our children cannot speak, we cannot hear them? That is autism’s weakness.
You think that because my child lives behind a wall, I am afraid to knock it down with my bare hands?
You have not properly been introduced to this community of parents and grandparents, of siblings and friends and schoolteachers and therapists and pediatricians and scientists.
Autism, if you are not scared, you should be.
When you came for my child, you forgot: you came for me.
Autism, are you listening? (ASAN 2009.)

2013 Suzanne Wright co-founder of Autism Speaks, released a written “call to action” on the “epidemic” known as autism. In this letter she compares things like, children having autism to a person being “gravely ill” or “missing”. She refers to autism as an “epidemic” and a says that it is a “monumental health crisis”. By this, she is only adding to the already damaged stigma of autism. Autism Speaks talks about autism as if it should be feared, and is using their large platform to promote negative stereotypes, and collect on people’s pity.

3. Autism Speaks Endorses The Judge Rotenberg Center

The Judge Rotenberg Center is a live-in facility in Massachusetts, for individuals with severe disabilities. The center is known for its no-rejection policy, and because it’s the only facility in the U.S. that still uses electroshock therapy. The JRC uses an electroshock device called the graduated electronic decelerator (GED). This device sends electroshocks to a person’s body, and operated by remote. They are made to wear these constantly, and can be subjected to shock at anytime. The purpose of the shock is to eliminate undesirable behaviors, in hopes a person will associate the behavior with the shock, and discontinue the behavior. This practice is called aversion therapy. Various people have spoken out about their treatment while at the JRC. Stories of being shocked for things like stimming, being too loud, refusing eye contact, and refusal to take off a coat. These shocks have lasting effects, well after the pain has subsided, including things like PTSD and burns to the skin. The JRC has had numerous controversies in its history including several lawsuits, a viral video of the torture of a student, and 6 deaths. Yet, a few years ago Autism Speaks listed the JRC as a viable service provider in its Walk Now For Autism Speaks event in D.C. I won’t go into much detail of the abuse that has gone on, and continues to go on at the JRC because it includes subjects like torture and ableism, which I know can be triggering for some. If you’re interested, there are several testimonies and you can find online in regards to the inhumane treatment of the JRC.

4. They Don’t Include People with Autism in Positions of Power

Until recently Autism Speaks excluded people with autism from its Board of Directors, and from any position that holds power. Long story short, they’ve been making decisions for what’s best for people with autism, without actually including people with autism. In 2013 Author John Elder Robinson resigned from roles with the organization Autism Speaks. Robinson volunteered and worked with the organizations Science and Treatment Board. Upon the release of I Am Autism, Robinson felt compelled to resign and cut ties with the organization. He released a public letter explaining how he felt the organization was doing more harm than good, due to the way they choose to portray autism. In 2015 Autism Speaks added two new members on its Board of Directors. While this may be a small step in the right direction, people still feel their views are ablest and are guilty or portraying autism in a negative way.

Autism Speaks is only one of many ASD non-profit organizations. There are so many other non-organizations that are worthy of your support and donations. I am fully aware that every charity and non-profit organization has its own unique goals and mission. It’s very clear that Autism Speaks is geared towards parents and caregivers of children with autism, research for prenatal testing and finding a ‘miracle cure’ for autism, and ‘spreading awareness’. Since all of this controversy, Autism Speaks has spoken out and said they are working on better serving those with autism. They added a new section to their website labeled “For the Record”. This is them explaining they have refocused their mission, in hopes of creating a more of an impact. They then go on to explain why they’ve chosen to remove the word “cure” from their mission statement. Also they restated their position on vaccines, and the use of aversion therapy. No one is perfect. And while they have made strides in the right direction, I still can’t conscience support them. When you know better, you do better. My purpose is not demonize Autism Speaks and those who support them. I in no way think less of a person who supports Autism Speaks. I just think it’s so important people know the facts, and that are other deserving and inclusive. All of this started because I was curious to why Autism Speaks isn’t generally accepted by the autism community, and took the time to ask. If you want to be an ally and support people who are autistic, be accepting and inclusive. Support charities and non profit organizations that includes the voices of people with autism, and are geared towards supporting people with autism. If anyone is interested in any autism friendly non profits I’ve listed a few below.

  1. Autistic Self Adocacy Network (ASAN)

  2. Autistic Women & Nonbinary Network (AWN)

  3. Self Advocates Becoming Empowered (SABE)

  4. Asperger/Autism Netowork (AANE)

  5. National Autistic Society (NAS) UK Based

  6. Autism National Committee (AutCom)

  7. Autism Network International (ANI)

  8. Organization for Autism Research (OAR)

Unexpected Lessons

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When my daughter was diagnosed with autism, it left me brimming with anger, and feeling at a loss. I felt robbed of my child. What would this mean for my daughter’s future? An immense amount of fear and sadness followed me for a long time. I honestly thought I’d wallow in those feelings forever. Looking back, I never expected what once felt like the weight of the world, to morph into an endless amount strength and determination. Autism has helped me grow in the most unexpected ways.

I’ve learned to never judge a book by its cover, and to leave any and all presumptions behind. Without even thinking, a person will make an assumption. We naturally cast judgment- it’s human nature. Autism has helped me learn to empathize on a new level. I know what it’s like for someone to see your kid having a meltdown in the store. The endless glares and unsolicited advice, it’s enough to make you cry. At first glance you probably see an unruly child, who looks way too old to be on the ground having a ‘crying fit’. When in reality, she’s having a hard time. She’s experiencing a sensory overload, or something unexpected has just happened. This has happened more times than I can count. I’ve experienced the hurt that comes from someone making an assumption about my daughter, because she has autism. While these aren’t positive experiences, they’ve humbled me. These experiences have allowed me to become a more compassionate and understanding person.

Through autism I’ve discovered the true beauty and power in fostering kindness. Kindness gives you a chance to right a wrong, change someone’s perception, be inclusive, solve conflict, and touch someone’s life. Kindness breaks down barriers, and builds bridges to things like inclusion and acceptance. Autism has granted me the gift of perception. I’ve learned that love needs no words, and to celebrate the little things. Things like unconditional love and acceptance have taken a whole new meaning since embarking on this journey. I had to learn to let go of the preconceived notions I had about happiness. Happiness isn’t found in ‘perfect’ or ‘easy’. It’s something you manifest within. People often wonder, how does someone find peace in something so unexpected, that comes with so many uncertainties? The answer is, perception and acceptance. It hasn’t been an easy journey. Autism is not easy. It has its hard days. There are days I feel defeated, and I still worry. But through this journey, I’ve discovered a strength within myself I never knew existed. And truthfully, I’m a better mother and person for it.

A Year of Great Strides

 
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If you told me 3 years ago that my daughter would one day be talking in full sentences, dressing herself, and proudly walking her little sister to class, I wouldn’t of believed you. Around 18 months, Olive had started speech therapy. By two years old she had been evaluated, and diagnosed with autism. While we were happy to finally have answers, watching my child struggle and feeling helpless was the hardest thing to endure. In the beginning we were told she had severe autism and was non verbal. She didn’t point, babble, or respond to her name. As an infant she would vigorously shake her head back and forth. I was terrified she was having seizures, but it was later confirmed that her head shaking was all voluntary muscle movement. This continued but gradually turned into ‘flapping’ and other means of stimming. She would do this when she was excited, overwhelmed, or trying decompress. She wouldn’t make eye contact, but was always extremely friendly and outgoing. As a toddler she would purposely bump into things or people. I would catch her sandwiching herself between couch cushions and pillows, or flipped upside down on her head watching television. It took a long time to figure out what worked for her. She loved playing in the pool and taking a bath, but would cry every time she got out. Certain clothes she won’t wear, like jeans. She has always been under responsive to touch, and even pain. A lot of this was explained to us when Olive was diagnosed with sensory processing disorder. This explained a lot of her behaviors and texture preferences. She craved compression and would find ways to “sensory seek”. Olive’s diet consisted of about 4 or 5 foods, cooked and cut in a precise way. She struggled with over stuffing her mouth, or would refuse to swallow her food. By the time she was 3, she was having serious food aversions. She would gag while eating, struggle with swallowing, and refused eat food at some points, and I could never understand why. Unfortunately, this caused her to lose weight and added to her already troubled GI system. Potty training did not seem likely, and she was constantly in extreme discomfort.

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When Olive entered public school she had only previously been at home with me and her younger sister. She started kindergarten last year, and was in a main stream classroom, and received therapies through the school. I had prepared for the worst and hoped for the best. That year she learned a lot, and her speech took off. She struggled a lot with the routine, and even more so when the routine was broken. She would have meltdowns, and become unconsolable. It would take one seemingly small incident that could set her off into a meltdown. I would get calls and emails saying she would be having a hard time, and I would go pick her up from school. By the end of the year at her last I.E.P. meeting, we were told she had not met a lot of her requirements and would not be moving forward. Even though we knew it was best, it was still hard to hear. We are now into our second year of kindergarten, same teachers, and the same classroom. This year has been completely different than the last. She’s right where she needs to be. I have been absolutely blown away at how much she’s learned. She’s counting, spelling, reading site words (a lot of them!), writing her full name, starting to write sentences, and her speech is has improved so much. Socially- she’s been playing with other kids, and making new friends. She’s learned the days of the week, and months of the year. And most importantly she’s conquered the majority of her I.E.P. goals for the year. This year her and her sister did dance and soccer, and love it. She’s lost 4 teeth, and genuinely got excited to see Santa. Seriously what more could I ask for?

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Even with so much progress being made, looming in the back of my head is the fear of the uncertian future. It wasn’t until my daughter was diagnosed with autism, that I became aware of just how unaccepting and dismissive people are of what they don’t understand. The idea of my daughter growing up in a society that views people on the spectrum as ‘broken’ or in need of an antidote, leaves me feeling angry. I hate that there are people desperately hoping she’ll “get better”’ and “won’t be autistic anymore.” Meanwhile, a large part of society thinks ‘pity’ is a form of compassion- it’s not. It’s so frustrating. I don’t want people to feel sorry for me, or view my child as some sort of burden. Her and her sister are my whole world, just as any parent feels. And I 100% love and accept her as is. My concerns mainly fall onto the lack of acceptance and inclusion there is for the autism community. I don’t want to live with this fear that my child is being made to feel less, or treated unfairly for being different. People shouldn’t have to fit a certain mold to be considered worthy or treated as an equal. People on the spectrum are at a much higher risk for depression, anxiety, and suicide. They are more likely to be bullied and subjected to abuse. I can’t help but be alarmed and concerned for the future. Honestly, all you can do is take it one day at a time, and hope the rest eventually falls into place.

 
 

6 Things To Never Say To An Autism Parent

 

Over the years I’ve heard it all, from “Are you sure she has Autism?” “..but, she seems so smart.” and my favorite, “I’ll pray for you.”. No matter how much time passes, it never fails, someone unintentionally (I assume.) rubs me the wrong way. Instead of getting mad, and wasting my energy on people’s ignorance, I chose to put together a few comments and suggestions I could do without. However on the flip side, I do understand that a majority of people don’t realize they’re being rude or hurtful. And my only hope is that I can help clear up why some of these seemingly innocent remarks can be hurtful. Behold, 6 things you should never say to an autism parent-ever.

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“I’m Sorry.”- The last thing you want to hear upon telling someone your child has autism is, “I’m sorry.” While it may be an understandable and honest reaction, it’s extremely hurtful. Saying you’re sorry about my child is like saying there’s something shameful about having autism. Or that you pity me because ‘unfortunately’ my daughter has autism. I assure you we are extremely proud of our daughter. The only thing I’m sorry about, is that the world can’t be a more understanding and accepting place for her and others alike. Instead of apologizing for my child’s existence, try engaging differently. Asking questions and showing genuine interest won’t offended anyone, I promise. You can ask about their child’s interests and what autism means for their family. If ASD isn’t something you’re familiar with, let them know. This can be a learning experience and doesn’t have to be awkward.

“I Don’t Know How You Do It.”- This bothers me for numerous reasons. Mainly because it’s offensive. What I hear is that you pity me for being subjected to ‘unimaginable’ circumstances, when truthfully if faced with the situation, you too would rise to the occasion. Everyone thinks they aren’t capable until it happens to you. So telling me how I’m a super mom because I manage to love and support my kid, who happens to have autism isn’t a compliment. And I know this comment is meant to praise me on how ‘hard’ things appear and at times actually are, just know it doesn’t sit well. I don’t want my child to be made to feel like some burden on me, when that’s the furthest thing from the truth.

She’ll Eat If She Gets Hungry Enough.”- Actually she won’t. This is so frustrating for so many reasons. A lot of people aren't aware that autism usually comes with some co-existing conditions, like sensory processing disorder. Every meal is either a struggle, a pleasant surprise, or me begging my child to swallow her food or eat. Unless you’ve had to have your child on a specialized diet, or your child has an extremely limited diet, or your child is unable to feed themselves independently, you just don’t understand the heart break. Take a second to imagine having to watch your child’s weight drop drastically, endure G.I. issues daily, or seeing your child struggling to swallow their food, and gagging while trying to eat. I know your advice is meant to helpful, but know it’s just extremely frustrating.

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“She Doesn’t Look Autistic. Are You Sure?”- This is the most common response I receive after telling someone my daughter is autistic. “She seems normal to me.” Let me break this down for you. Telling me my child doesn’t ‘look autistic’ for one is a back handed compliment. This isn’t a compliment. I repeat THIS IS NOT A COMPLIMENT. Besides clearly having an extremely narrow view of what it means to have a disability (an invisible one at that.), you’re completely minimizing a person’s autism. You’re minimizing the hard work it takes to ‘appear normal’ to you. Please don’t minimize my child’s autism. It has taken many years of trial and error, a series of therapies, and an ocean of tears to be where we are today. Receiving a diagnosis isn’t as easy as you’d think because autism is such a vast spectrum. Some people have spent years just to finally receive a diagnosis and support. Autism is every day. There is no off switch, just better days than others.

“She’ll Talk When She’s Ready.”- This has always been painful to hear, especially knowing a large number of people with autism are non-verbal. Coming to terms that you might not ever hear the words ‘I love you.’ or ‘mama’ is tough. It’s something most parent’s won’t ever have to think twice about it. It’s the kind of thing you just have to take one day at a time. Now imagine strangers and family members in denial of your child’s autism, bombarding you with unsolicited advice. The uncertain future is hard enough to combat, the last thing I need is someone chirping in my ear, “Don’t worry she’ll start talking when she’s ready.”

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“She’ll Grow Out Of It.”- No, no she won’t. And that’s okay. I understand people say this for numerous reasons. Either they don’t understand autism is a neurological disorder that generally comes with other co-exsiting conditions, or they’re in denial. Not that children on the spectrum can’t flourish through therapies and hard work, but overall these services exercise and better a person’s the ability to cope, resolve, and redirect in an appropriate way. You can’t cure autism and you can’ just re wire someone’s brain to work a certain way. Autism doesn’t just vanish, so when you ask me “Is she still autistic?”, you’re essentially wishing away something very much apart of her whole being. I don’t love that my child has autism, but I do love my child as a whole.